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started to scream. She was very distressed and hard to pacify after this. The ambulance arrived and although, Josephine now seemed perfectly well ( albeit very tired), we were taken to hospital.
In A & E, Josephine seemed well and we waited to see the paediatric consultant. An A & E nurse was caring for Josephine whilst I called my husband to inform him of what had happened. The nurse was holding Josephine around her waist while sitting her on the nursing station. For some unknown reason, the nurse momentarily let go of Josephine and she fell backwards from the top of the nursing station onto the floor. Words cannot describe how I felt! Josephine then suffered her second seizure….(2 in the space of 1 day!). I was absolutely horrified. The same events occurred …the rigidness, the rolling eyes, etc. Doctors and nurses rushed Josephine into a cubicle and gave her medical assistance.
Although this experience in A & E was extremely distressing, in hindsight I feel that it definitely assisted in Josephine’s swift diagnosis. One of the doctors who gave her medical assistance in A & E just so happened to be knowledgeable about RAS and referred her to a well known consultant in the area who is well versed in the symptoms of RAS. We did not have to wait long for the appointment and Josephine was diagnosed with RAS on her first appointment with the consultant.
The consultant was so sympathetic and telephoned STARS during our appointment so I could obtain some immediate reassurance. The consultant handed the phone to me and I spoke to Trudie. I will never forget Trudie’s reassuring words “your daughter will not die from RAS.”
Before Josephine’s seizures I had never heard of Reflex Anoxic Seizures however I have become much more aware. I am a primary school teacher and we have one child on our school who suffers from the condition so I have been able to inform colleagues about the condition.
New experiences like Josephine attending nursery were an anxious time for us but with the support from STARS, the experience was made much less stressful. In fact, Trudie loaned us a video which we were able to take to the nursery so that they were aware about the condition in the event of Josephine experiencing a seizure. She has had seizures there and the staff have coped admirably. STARS has been an absolute godsend. Without the support, information and advice, I know we would have felt so helpless. My husband and I attended a STARS conference at the NEC which was fantastic. Being better informed definitely reduces the fear and anxiety about the future. Josephine copes extremely well with her condition. She still suffers with seizures but she is not treated any differently to any other child. Sometimes I find this difficult such as when she wants to climb to the top of a climbing frame but my husband and I have the opinion that she shouldn’t be held back because of RAS. She is wonderful…as far as we’re concerned a happy, healthy 4 year old!
Awareness about RAS is vital, particularly amongst medical professionals. If the A & E doctor who gave medical assistance to Josephine had not been informed about RAS, I dread to think what may have happened. I’m sure the diagnosis would not have been so rapid or worse still Josephine could’ve been misdiagnosed. Thank you Trudie and all who work at STARS. Your hard work really is appreciated.
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